Living With a Debilitating Disorder

Fibromyalgia is a wide spread chronic pain disorder that also causes fatigue and many other symptoms. For more information, click on fibromyalgia symptoms. It’s also considered an ‘Invisible Illness’ meaning there are no outward signs that someone is sick, and thus, look fine and capable. I didn’t ask for this disease, nor did I want it.

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Wasted Dreams

To be honest, I judged those with fibromyalgia before I fully understood it, unfortunately, through personal experience. Even though I had friends with it, I couldn’t help but wonder if, at times, they were hypochondriacs; whiny, lazy, and using their diagnosis an excuse. Now I’m on disability, only able to work PT. As a former perfectionist and over-achiever, I hate that I have to endure the judgments and accusations about not being a “productive member of society”, questioning my own value and worth. A good reminder that we ultimately end up being judged the way in which we judge others.

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What’s even more annoying are the well-intentioned people who think they have the answer. I believe my condition was brought on by multiple traumatic events. At one point, I was able to work full time when I could afford five hundred to one thousand dollars a month on healing treatments. Now I do what I can: eat the best that I can (there’s always room for improvement and financial barriers, as well), walk, hike, yoga, aerobic exercise when able, meditation, Epsom salt baths, essential oils, TENS unit, medication management, and massage and acupuncture when I have some extra cash. It’s about learning to cope and manage your stress.

I have my good days and bad days, just like anyone else. I feel like the good outweigh the bad but the bad days can be a nightmare if you take into consideration what I consider to be a good day.

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Beautiful View

A “good day” is when I’m able to maintain my positivity, spiritual connection, and inner peace despite my pain level being at a 7. I smile despite feeling like I have the flu but I can accomplish my daily goals, responsibilities, and function like most SAHM’s. I push myself even though it feels like I’m going to collapse. When it starts to feel like I’m being beaten with a baseball bat and nauseous from the pain and fatigue, I rest, and find relief to continue on. I’m a good mother; patient, involved, and attentive to my children.

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Fallen Angel

My “bad days” are when my pain level is at a 10. It feels like I’m being tortured; like my spine is shattering into a million pieces, my sacrum is being busted by a jack hammer, an ax is going through my shins, and the pain throughout my entire body is so overwhelming; stuck at the surface like I’m going to explode and felt so deeply I cannot move. I hold back the tears yet inevitably, I can’t hold back my emotions. Feelings of confusion, anger, powerlessness, shame, fear, and despair. I wonder if I’m cursed. I don’t want to lay in bed anymore, suffering. I have a million other things I’d rather and should be doing. My kids deserve the attention I’m unable to give at the moment. I am so tense that the energy is blocked and I can’t release the pain. I can’t relax enough to relieve the fatigue.

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Crying Angel

No matter how much I pray, fight it, or try to will it away, its agonizing horror greets me each morning. Its grip holds tight throughout the night. It sounds so crazy that I don’t even understand it. I’m angry that this pain gets in the way of living life on my terms. I don’t want to surrender to the reality of my limitations. I feel guilty that my kids are affected by my pain. I fear that it will never go away, that I won’t be able to support my children on my own, or that I won’t be able to fulfill my purpose here on Earth. I begin to feel hopeless.

Beautiful Angel

Beautiful Angel

Like I said, thankfully, the good days outweigh the bad. Most days I’m able to accept my suffering. But that doesn’t keep me from wishing or hoping that one day there will be a cure or that I’ll have the financial means to seek the healing that can improve the quality of my life.

I don’t write this for pity, attention, or sympathy. Honestly, I keep this truth about me pretty well hidden, like a shameful dark secret. This is my attempt at being authentic and vulnerable to give a voice to my wholeness; my dark and my light. It’s an attempt to raise awareness and support other sufferers of this illness.

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Transformation

I’ve heard Source tell me repeatedly, “Your pain is your power.” I’m not quite sure I believe that or understand yet, but I have to wonder if love could be the key to my healing? Maybe I’m just a dreamer. I long to be showered with love and affection, finding refuge in the safe, strong arms of a man, a quality of tenderness and care that may bring me back to homeostasis. Whose touch, embrace, and Soul may be a healing balm able to penetrate the deepest layers of my Being.

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Angel of Hope

I’ve done my work. Thirteen long years of facing my demons alone and shining Light in the dark, paving a pathway to healing. Yes, on my bad days I question everything. I doubt and grow impatient. Yet I continue to stand in my power and never give up. I know my heart is pure and I know what I deserve. I have to believe that the answers I seek are on their way. I’ve witnessed too many miracles to believe otherwise.

Never Lose Faith,
Rebecca

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